Author Topic: Post-surgery regrowth - second surgery or radiation?  (Read 1387 times)

RGG

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Post-surgery regrowth - second surgery or radiation?
« on: March 18, 2023, 02:30:35 pm »
Hello, I had retrosigmoid surgery for my initial 3x2 cm AN in 2017, and at the time the surgeon thought he removed it completely.  Unfortunately, my follow-up MRI in 2020 showed a new enhancement at the end of the auditory canal, and this has grown very slowly over the last three years and now stands at around 7 mm.  My surgeon said he doesn't think I should do a second surgery, and is sending me for a radiation referral. 

Has anyone had follow-up surgery after regrowth from a first surgery? Are there reasons why a second surgery is more difficult?  I'm a little worried about the long term effects of radiation (I'm in my early 40's), and the fact that if it fails I'll need surgery anyway.  I'm thinking if I should get a second opinion to see if it can't be removed completely with translab and not have to worry about it anymore.

Thanks for any advice or personal experience,

Rumen     

JW123

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Re: Post-surgery regrowth - second surgery or radiation?
« Reply #1 on: March 30, 2023, 02:58:10 pm »
I have a pretty similar situation. Surgery in 2011 and now I have regrowth. Its been monitored for a while and is now ready for action to be taken. I am going the radiation route, but have similar concerns. I'm in my mid 30s. But for me, weighing all the pros and cons, I think radiation is the choice for me.
Maybe contact Dr. Link at Mayo for an opinion of your case.

Sending my best!
Left side VS - 2.0 x 2.7
Retrosigmoid on Oct 17th 2011
Surgery at Mayo Clinic with Dr. Link & Dr. Driscoll
SSD left side, delayed temporary facial weakness, ongoing severe headaches.

DZ

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Re: Post-surgery regrowth - second surgery or radiation?
« Reply #2 on: April 13, 2023, 02:53:12 pm »
I had my procedure 8 months ago, so I dont have personal experience with regrowth (yet!).  However, your assessment to get a 2nd opinion (and 3rd and 4th and 5th) opinion is an excellent one given the high variability in treatment overall and no standards of care !  I would suggest including UCSD (Friedman/Schwartz) if you attain other opinions. My understanding is that they treat the most patients in the country with AN.  Let us know what recommendations you receive.
Significant Left-sided hearing loss & some tinnitus, Size of tumor was 2.1cmX1.9cmX1.5cm. Translabyrinthine surgical resection on 8/18/22 at UCSD. Thin remanent left on facial nerve. Post op -No left hearing, bilateral tinnitus, no significant balance issues, recovering.

donjehle

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Re: Post-surgery regrowth - second surgery or radiation?
« Reply #3 on: April 13, 2023, 03:15:56 pm »
Hi RGG,

You asked about if there were reasons why a second surgery might be more difficult.  I am certainly not a surgeon, and I have no clue when it comes to Acoustic Neuroma surgeries.  But having worked in a hospital for many years, I do know that for some procedures, patients developed scar tissue which sometimes made the second surgery more difficult than the first.

Again, I do not know if this is true with acoustic neuroma surgery, and I would have no idea if the original surgeon was not able to remove all of the acoustic neuroma, if it's possible that scar tissue would have developed around the part that was left behind.  And I don't know if radiation could penetrate the scar tissue and be effective?

But you are asking excellent questions, and I think you should ask them to your neurosurgeon and to other specialists you might consult.  What I have learned is that if you ask a neurosurgeon about radiation, many of them will play down the effects of radiation.  And if you ask someone who specializes in radiation for acoustic neuromas, some of them will play down the effects of surgery.  That's why I appreciate the 'team' approach that some hospitals have where acoustic neuroma specialists in both surgery and radiation discuss your situation together.  Their answers are more balanced in my opinion.

But again, you are asking the right questions.

Best wishes on your journey!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

v357139

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Re: Post-surgery regrowth - second surgery or radiation?
« Reply #4 on: May 08, 2023, 07:08:38 pm »
Hello, I had retrosigmoid surgery for my initial 3x2 cm AN in 2017, and at the time the surgeon thought he removed it completely.  Unfortunately, my follow-up MRI in 2020 showed a new enhancement at the end of the auditory canal, and this has grown very slowly over the last three years and now stands at around 7 mm.  My surgeon said he doesn't think I should do a second surgery, and is sending me for a radiation referral. 

Has anyone had follow-up surgery after regrowth from a first surgery? Are there reasons why a second surgery is more difficult?  I'm a little worried about the long term effects of radiation (I'm in my early 40's), and the fact that if it fails I'll need surgery anyway.  I'm thinking if I should get a second opinion to see if it can't be removed completely with translab and not have to worry about it anymore.

Thanks for any advice or personal experience,

Rumen   

I don't think any doctor will guarantee that he can completely remove an AN.  Sometimes it is stuck to a nerve and they have to leave some in so as not to damage the nerve.  I have heard of people on this forum who had regrowth and went for a second AN surgery.  So it has been done before.  Let me know if you want me to try and find that person.
Dx 2.6 cm Nov 2012, 35% hearing loss.  Grew to 3.5 cm Oct 2013.  Pre-op total hearing loss, left side tongue numb.  Translab Nov 2013 House Clinic.  Post-op no permanent facial or other issues.  Tongue much improved.  Great result!!

bri-82

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Re: Post-surgery regrowth - second surgery or radiation?
« Reply #5 on: May 09, 2023, 08:47:56 am »
Hi,

I have had two surgeries and two radiations. I just turned 40. I was first diagnosed when I was 27 or 28. Both surgery and radiation have short-term and possibly long-term effects. It is a common misconception that VS surgery cannot have long-term effects. Further, there is a genetic component to this (and all tumors) that isn't discussed often on this website, i.e., it can be a genetic component that actually drives a regrowth meaning that even if a surgeon is able to "fully remove" a tumor there is no guarantee that you wont experience a regrowth down the road because its the genetic flaw in the structure or a remaining cell causing the growth and faulty cell reproduction in the first place. What we often see in the literature are regrowth rates based on 5-year or even 10-year timelines which don't give us a full picture of what is happening long-term.
4.5 cm Right AN.
Sub-occip. Surgery 2011 @ Wash. Hosp. Center
Gamma Knife 2012 @ Wash. Hosp. Center
Translabrythine Surgery 2017 @ Johns Hopkins
Cyber Knife 2022 @ Johns Hopkins
Sub-occip. Surgery 2023 @ Johns Hopkins